Tag Archives: CureTogether

As I get to know the QS community and the wider life-as-experiment one, I’ve noticed something troubling. In some areas there seems to be more men participating in our work than women. In this post I’ll try to identify the problem, suggest a couple of causes, and then get your feedback on what you think is going on and how we might improve things. (Note: I present this in the spirit of making our work accessible to everyone, and in hopes of getting a discussion going. I’m taking a bit of a risk here, so if I accidentally ruffle any feathers, please be generous and let me know so I can fix it up.)

The problem

This first came to my attention during a conversation I had earlier in the year with a very bright friend I was collaborating with on my Edison project. While discussing who our possible users might be, she made the casual remark that self-tracking tools are a “guy thing.” To back this up she pointed out that most of the experiments created in Edison are by men. She went on to wonder whether the very idea of treating life as an experiment appeals more to men than women. “What woman would want to look at relationships as experiments?” she asked.

The Mayo Clinic held their Transforming Healthcare Symposium last week in Rochester, MN. On display were the latest innovations they are brewing up in their SPARC Innovation Lab, like real-time, on-screen specialist consultation when you go to visit your primary care doctor. A stellar lineup of speakers from Intel’s Craig Barrett to IDEO’s Tim Brown and SPARC’s passionate Maggie Breslin talked about patient empowerment, change by design, and healthcare as a conversation.

There was also a competition for ideas that would change the future of healthcare. I entered this competition using self-tracking as a topic, and was one of 3 winners! Here is the 5-minute talk I got to give to 500 healthcare change agents at the Mayo Clinic, and the written summary that won the competition.

Detailed
self-tracking will transform our understanding of our bodies, our
health, and our medicine. Geeks are already tracking everything from
calories to blood pressure to steps taken during the day (Quantified
Self). People with chronic conditions track their treatments, pain
levels, and side effects (CureTogether).

The ultimate promise when this
goes mainstream is true personalized medicine, where each person gets a
treatment plan individual to their body. It’s an exciting future, and
the seeds are being planted now.”

A common question people ask me is, “Why do you track yourself?” The primary answer, for anyone living with chronic pain, is simple — to help reduce the pain. Migraine, for example, is a chronic condition where self-tracking can have a positive effect.

According to the National Headache Foundation, migraine affects 13% of the US population, with women 3 times more susceptible than men. A study of tracking migraine using an electronic diary showed that tracking helped sufferers accurately predict incidents of migraine. Headache diaries have also been shown to be comparable to clinical interviews for diagnosing migraine. This greater self-knowledge that tracking brings is invaluable. Like predicting earthquakes and volcano eruptions, predicting a migraine can help a sufferer either take action to prevent it or prepare for the worst. In order to better understand how to predict and alleviate migraine pain, a live, crowdsourced research study on migraine is being conducted.

The call for participants is below, but first, the story of a self-tracking migraineur.

Mercedes’ Story

Mercedes (her online name) has had migraines for 30 years. That’s almost as long as I’ve been alive. She tracks her migraines in order to minimize how often they occur. Here is her story, in her own words:

“This is what I track:

Amount of bedrest (since I do not sleep well, I find that bedrest is a better indicator)

Foods I eat

Stress levels

Caffeine

Heat

Computer work

Lunar calendar

What I have found is that incidents of migraines can be minimized if:

I get to bed between 9 and 10 p.m.

I restrict certain foods such as chocolate, sugar, red meats and salt

I meditate and exercise to avoid high stress levels. By exercise I mean largely tai chi and dancing

Since most of my headaches begin early in the morning before I get up, drinking coffee and applying heat to my neck first thing in the morning is beneficial more often than not

I have started to track the lunar calendar and the length of time I spend on the computer and, while not conclusive yet, find that on occasion the full moon and/or too much time at the computer coincide with my headache

Essentially to manage my headache, I have to eat right, rest enough, cope with stress, drink caffeine and apply heat (the hot tub is great for this too). And maybe avoid too much time at the computer. But how to avoid the full moon?

But even with that, there are still unexplained times when I get headaches. I am also trying to gauge if the severity of the headaches can be identified in advance but so far I have come to no conclusions.“

Mercedes’ story shows the dedication of chronic pain trackers and the complexity of the conditions they face. If enough people living with pain came together to track themselves and compare notes, we would be a lot closer to understanding these conditions.

And stopping the pain.*Participants Needed for Online Migraine Research Study

CureTogether is conducting a study on Migraine. People who experience migraine are invited to self-report data on their symptoms, treatments, and triggers. The goal is to discover associations in this data to help characterize which migraine treatments work best for patients with different groups of symptoms.

Participation is entirely voluntary, anonymous, and completely confidential. It should take 15-20 minutes to complete. Statistics for the study are posted live, so you will be able to see aggregate results of other participants’ data after completing your entry.

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